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Friday, 17 October 2014

A great little story of ordinary dignity and abominable shame

There
is a great little story that I think it deserves to be told.

It's a
great little story of ordinary dignity & abominable shame that
takes place in Turin, Piedmont.

Here a
group of parents got involved with a selves-direct activation to protect the rights of their
children with sensorial disabilities (deaf, hear-impaired & blind minors).

They had to learn, organize & advocate
against the city-Government Hall, the Regional Board, or both.

So far, this
great little story is composed of three time.

This great
little story began in November 2013: the parents of children with
sensorial disabilities found out that the City of Turin aimed to
reduce by 40% the hours of specialized rehabilitation
that support the blind, deaf & with hear-impairment
children both at school & in the family. The dreaded decision to
cut by 40% the available 10 hours per week to every boy / girl, arose
from a number of different factors.

Those
factors are quite notorious in everyday Italian experience: a mix of
incompetence, incapacity in planning, lack of transparency, all
mixed-up with a willingness to cut the weaker while favoring the
stronger... To address this risk of cuts, the parents of
children with sensorial disabilities started to meet, discuss, get
informed & share those information through web tools; they
created a group that soon became “Spontaneous Committee Sensorial
Disability Torino”. Parents studied law, consulted legals, wrote
documents; they asked for a public debate. After a sad theater of
continuous postponements, then they claimed, obtained & met the
leaders of the City and Regional Government in a joint session of
public debate. Parents demonstrated that:

the dreaded
cutting in hours of educational support was illegal, as by law these
support measures can not be cut even on the grounds of lacking funds;

in any case, there are available resources: the production
prizes of those diligent officials who wanted to illegally cut
services

the cuts were based on the three-cards game:

→
card (1): the City NEVER provided any justification of the funds
received by the Region on this issue, but only a historical vague
expenditure revenue;

→ card (2): the Region NEVER VERIFIED how
the funds were used;

→ card (3): the result is that the City &
Region implicitly agreed to illegally cut the rights of the disabled,
while proposing the ballet of virtual-responsibility, in which each
part refers to the other the blame of the cuts.

Parents
produced a structured document (here IT version only),
that was presented on Dec. 23rd
to the leaders of the Region & the City Governments, during a
public debate in front of more than eighty parents, furious &
aware of their rights.

At the end of the debate, the leaders of
the City and Regional Governments guaranteed that: there won't any
cuts; new measures were taken to ensure the continuity of the support
& rehabilitation service in the quantity & quality so far
provided; there won't be any more risk of blackmailing individual
parents by suggesting to accept fewer hours as an alternative to the
closure of the service. At the end of the debate, the parents
remembered to City and Regional Governments that their possibilities
were basically two: maintain the rights & deliver the service, or
cancel them off, with the following assumption of political
responsibility. With this conclusion, parents greet the leaders of
the City and Regional Governments wishing happy holidays. End of the
first half. The second half of this great little story of
ordinary dignity & abominable shame starts in June 2014. Between
Dec 2013 & summer 2014 parents maintained & expanded their
network in order to always been up-dated on every possible thing. In
early June they discovered that during individual meetings, some
parents received the shocking proposal of reductions in
rehab-programmes (without any tailored reason, the suspension of the
service from early June to September) as alt

ernative to a feared
not-reopening of the service after the summer. Parents felt the smell
of blackmail & betrayal of the public promises made by the City
and Regional Governments, no later than six months before. Parents
reconstructed the picture of the situation, updated again, wrote a
new document (IT version downloadable here),
asked for & got an immediate new public debate. During this “urbi
et orbi” debate, a formal commitment from the City Government was
defined: - there is no risk of “not-reopening” the service in
September; - the summer suspension f the rehab-programmes can not
be related to the closure of primary schools, as they depend on the
number of hours necessary on the base of each children tailored
education plan & individual rehabilitation programmes; - the
pressure on single parents with more or less overt blackmail won't be
tolerated anymore.

Once again, parents reminded to the City &
the Regional Government that the possibilities are basically two:
maintain the
rights & deliver the service, or cancel them off, with the
following assumption of political responsibility.
Ending the meeting with such clear news, parents greeted the leaders
of the City & Regional Government, wishing good summer & good
everything. End of the second half. The “third half”
was, unfortunately, very different from the rugby gentlemen'
tradition. Summer 2014 were a time when two things happened, handled
in a completely different way by the City & the Regional
Government. The Municipality warned parents that the rehab
programme, together with the whole field of educational support,
would pass from the Educational Dept. to the Social Assistance Dept.
The warning reached parents before as a mail, then with a call for a
public meeting scheduled on August 28th.
Despite the holiday period, the meeting was attended by over 40
parents, in front of which the leaders of the City announced the
change of internal department reference, adding some guarantees: the
service will not be touched; there will be no more individual
pressure; there is a general agreement between the Regional & the
City Government to ensure the rights of children with sensory
disabilities. This time, however, it is not the end of the “third
half”.In fact, in the beginning of September 2014, astonishing
news began to circulate among parents. Those news were a split on the
summer-reassurances just heard: when some parents of deaf children
referred to medical departments for the regular checkups, for the
upgrade of the cochlear implant or for the replacement of no longer
functional parts, they were asked their ISEE-model (to indicate their
economical situation); the requests were peremptory: participate to
the costs on the basis of their ISEE-model, or the closure of the
practices.What was impossible, it happened. Again, parents
communicated, studied the situation in details & reconstruct the
overall picture, mobilized & found that:

before disbanding
for the corruption-scandals, the former Regional Council unanimously
signed a resolution to cut services for the disabled (IT version here)

soon after, a “conscientious official” signed a
Determination from the Direction of Healthcare Management (IT version here):
the principle of discrimination on the base of economic income
affected the following three items:

it is not the moment to stay calm

→ implants for deaf
children from 0 to 14 years → cochlear implants for all deaf
people → wigs for children, adolescents & women with hair
loss because of chemotherapy. You read it right: the holes in the
budget of the Piedmont Region are not due to a nefarious policy that
between Pharaonic Olympics expenditures, unnecessary high-speed
trains & skyscrapers spent billions of euro. To heal these
chasms, the Regional Government did not revise its fiendish &
iniquitous priorities, they decided to save money by introducing the
discriminant of income & so forth to cancel the rights dedicated
to hear to deaf children with cochlear implants, & the right to a
decent life for children, girls & women with cancer. It
was far too much.

It
was not just a matter of safeguarding the rights at this point. It
was a matter of stopping a shameful abomination, an abominable shame.

Again, all of this was taken in charge by parents: they
studied the documents, prepared for a possible appeal to the
Administrative Court, as they found out that the measures, beside
being shameful as contents, seems to be also illegal. But there
was a timing-problem: having the Regional Government made the
decision in early summer in total silence, parents found there were
few days to get around: summer ate the 60 days available to appeal to
the court. Everything had to be solved & decided within October
the 3rd.
It was SeptemberParents divided the various tasks on the table:
some parents worked on the legal side, preparing the appeal to the
Administrative Court; others started a tense, dense & dry
dialogue with the Regional Government. The association FIADDA met the
Councillor for Equal Opportunity, who agreed the measure was
outrageous, & declared to be ready to produce a new resolution at
“zero time” annulling the shame of the summer deliberation. The
firm contact with the Regional Department of Health produced even
more, as it turned out that:

the measure was far more than
illegitimate: who wrote the resolution (the Regional Direction of
Health) did not know that the cochlear implants are included in the
LEA (Essential Levels of Care), so the free-distribution is
obligatory

the resolution was
written improperly, with ambiguities which caused mistakes to the
readers

the Regional Government was well aware that when a
service is included in the LEA, if the ASL (Local Health Dept.) &
hospitals asked for the ISEE-model & for participation, they are
making an illicit request, which can be charged by a Court

although everything was so clearly wrong & ambiguous, only one
local ASL in the whole Region requested a clarification; all other
local health departments & hospitals had illegally required
ISEE-model & participation to the costs to parents, without being
aware of the whole question.

This is when this abominable
story of shame turned to be a small, great history of rights &
dignity.

The
Regional Government circulated a formal signed paper, which clarifies
how the ISEE-model & the participation to the cost is not due at
all (IT version here).
Furthermore, the Regional Health Dept. asked Fiadda association to be
so kind to contact all parents in order to report any abuse, so that
they can intervene promptly. Parents pull back their breath,
circulated the necessary documentation & made it available in
free download in order to make any parent ready to protect the rights
of their own children. Finally, it was the time to celebrate a proper
third half.

I am
strongly convinced that only a community-based direct-process has
something honest to tell to the “modern” forms of democracy. I am
also convinced that the more information, stories, witnesses &
documentation shall circulate, the better is for a raise of
responsibility in the community & of awareness on people rights.

For
these reasons, all the documentation is available here in free
download:

the Decree of the President of the Council of
Ministers, which enrolls performances at stake within the LEA (IT
version here),

the official letter from the Regional Director of Health
defining that the cost-participation is NOT required (IT
version here)

a small toolkit for all parents to know their rights together
with a “what-to-do” list designed by FIADDA Association (IT
version here)

At the moment, this is the end of our story, even if the new
provisional budget of the Piedmont Region (IT version here)needs to be read
seriously.To be honest, some parts are still missing, such as the
complete deletion of all measures that the Regional Government
decided this summer: the hearing-prosthesis & the battery for
cochlear implant should be included in the obligatory free-offer; it
must be cancelled the shame of the cuts made on the skin of children,
girls & women with cancer, in addition to the cuts on disabled
people and the elderly in general.We
made our part, & we are here to continue.This is the story so
far. It is the story of a group of well-determined parents
to defend their rights, convinced that, as Italo Calvino wrote in
“Invisible cities” (1972), "You take delight not in a city's
seven or seventy wonders, but in the answer it gives to a question of
yours ". As
parents of children with sensorial disabilities, we are interested
only to talk about rights; we don't care a thing of their appearance
& representation. We want clear answers, no smokey
speeches.Within all this story, there is a very precious gift of
recovery: the opportunity to learn how to take what is ours, how to
regain what belongs by rights to us & to our children, it has
been far one of the greatest gifts that this group of parents was
able to donate to ourselves.

I think that this great little
story of ordinary dignity & abominable shame deserves to be told,
to be known, to circulate; the decision of making documents available
in order to foster the chance to duplicate our experience just
followed.

As a
parent, the hope is that it might become a source of inspiration for
others, ready to repeat & multiply wherever there will be the
need.

Updates
will be available in future posts, as far as the story will
continue.